Being autistic and the challenges of accessing mental health support

When I first got comfortable self-identifying as autistic, I was very angry with the mental health profession. I felt let down that in all my years of mental health difficulties before this, no one had ever thought to question that I could be autistic and that that might explain how I reacted to certain situations.

When I was diagnosed with bipolar a couple of months later, I thought there was a good possibility that mistreatment of my mental health over the years, because of the lack of this crucial piece of information, had been a significant factor leading to the onset of bipolar symptoms.

I saw the inherent difficulties that treatments like CBT (cognitive behavioural therapy), often the first line of therapy offered for anxiety and depression, could potentially present to autistic patients/clients. I was worried about what mental health support would be available in the future for myself and my children.

Now, nearly two years on, I want to reflect more generally on the issue of being autistic when it comes to accessing mental health support. I am in the privileged position of being able to have continued access to private support from a psychiatrist and a therapist, and I have been trying to come to terms with how being autistic impacts me and my mental health and the consequences of that for my future treatment.

Anxiety is NOT an inherent part of being autistic

Due to the prevalence of mental health difficulties within the autistic population, it has become commonplace to associate autism with high levels of anxiety. However, being anxious is not a defining trait of autism.

Society and mental health services are coming across many anxious autistic children, young people and adults, but this is mainly due to the inhospitable environments we must operate in and the lack of knowledge and understanding of autistic experience.?

My experiences of anxiety

I never labelled it as anxiety when I was a child. Still, I can see that I was anxious from as early as I can remember—anxiety about being left at school, parties, or activities without my safe people. Flying anxiety, which I only learned about recently, stopped us from going abroad on holiday when I was younger. Anxiety about exams, which resulted in me missing some national tests at age 14 and needing support and encouragement to manage this better for my GCSEs. Anxiety stopped me from venturing out of my safe spaces and from my safe people; it was easier to avoid putting myself through things, and I was lucky to have a big extended family with whom I felt very secure, so my life was not as restricted as it could have been.

In my mid to late twenties, I experienced some intense anxiety in the workplace, mainly around doubting myself and my abilities, struggling to see a clear career path and never feeling like I was achieving or working to my full capabilities. I missed the structure and regular feedback of the academic world. The world of work was much more unpredictable, and it was less easy to control my anxiety because I wasn’t in control of my environment and was reliant on other people to a much larger extent. Being autistic and not instinctively understanding other people, social conventions and office politics no doubt significantly increased my anxiety during this phase of my life.

More recently, I have noticed that whilst I can experience long periods of feeling generally anxious, a sense of unease with myself and the world (usually accompanied by depression), I do not experience the same intense and overwhelming situation/trigger-specific anxiety that I experienced in the past. In terms of being conscious of being anxious, I am either low-level anxious most of the time or not. That’s not to say I don’t have worries or concerns, but they don’t have the same physiological symptoms of anxiety, nor do they play on my mind to the same extent.

My experience of anxiety has changed over time. I haven’t felt significantly anxious consciously for around 9 months, since recovering from my last severe depression. However, now, I seem to be anxious in my sleep, with frequent dreams that my therapist has indicated show high levels of anxiety. Have I learnt to control my conscious anxiety so much that my subconscious has taken over? Perhaps I do not recognise when I am anxious anymore, as I only notice my emotions when they are more extreme. I do not experience the physical sensations of anxiety so much these days, but could that be due to desensitisation? Have I been so exposed to feeling anxious for long periods that my body doesn’t respond in the same way?

Anxiety and CBT whilst being autistic

CBT is often seen as problematic and potentially harmful to autistic people. Yet this is the first, and sometimes only, line of therapeutic support that may be offered to someone presenting with anxiety. It is more likely to be problematic if you don’t know you’re autistic.

I had a CBT-specific private therapist for a short time back in the late 2000s. I found that the pure CBT approach was helpful briefly; it challenged some assumptions I was making, but I always felt it didn’t quite fit my circumstances. Understanding the ‘hot cross bun’ idea of the interactions of thoughts, emotions, body, and actions/behaviours was helpful. However, it seemed too simplistic then and didn’t always work for me.

I also did an NHS group-based CBT course, which I found more helpful; it gave me some tools for expressing to others how I was feeling and experiencing things. It helped me understand the interactions between body and mind more.

I can see now that being autistic increases the chances of me being anxious in any given situation because I am taking in a lot more information, and I don’t have the instinctive understanding of social situations and communication that most non-autistics seem to have. However, as I have experienced more in my life, have become more used to social conventions, learnt how to do small talk, and seen and been okay in many different environments, I have become more comfortable in various environments and contexts. I have also, since realising I am autistic, taken active decisions to not put myself in situations that I know will be anxiety-inducing but have little benefit to me.

Had I known I was autistic much earlier in my life, I would have been able to understand why certain situations increase my anxiety levels. I would have been less self-critical when I struggled with things. CBT could have been more effective if I had learnt that it is only effective against irrational fears. No amount of gradual and repeated exposure to something harmful to me due to the way I experience and process the world (but that others deem an irrational fear) will ease the anxiety. It is more likely to cause trauma.

The importance of distinguishing between Autistic Burnout and Depression

Another common difficulty for autistic people is the experience of autistic burnout. Again, this will be more problematic if you don’t know you are autistic. Since realising that I am autistic, I can identify that I have experienced autistic burnout on multiple occasions. For me, the combination of autistic traits and bipolar symptoms, both being unidentified and therefore not managed in any way, led to some of my deepest depressed phases.

Autistic burnout was something that I only learned about and truly understood shortly after my self-identification as autistic. To read more on autistic burnout and the crossover and differences between autistic burnout and depression, I highly recommend the information provided by Viv Dawes (https://www.autisticadvocate.co.uk/autistic-burnout) and David Gray-Hammond (https://emergentdivergence.com/2024/03/20/autistic-burnout-when-the-autistic-brain-overloads/).

I now believe that I had, for several years prior, gone through repeated cycles of being in autistic monotropic flow and hyperfocusing, feeling mentally well, but not realising that I was over-exerting myself and triggering hypomania symptoms. Hypomania gave me excess energy and stamina, so I would keep going with the over-exertion, possibly for 1-2 months, before eventually hitting a stumbling block of some kind. Due to my lack of sustainable energy, I would be sent crashing into autistic burnout. Except I would think I was entering another depressed phase, especially in the first couple of weeks following the stumbling block.

The way to treat depression is to keep activating, to keep pushing through. I could never really understand why, despite being on anti-depressant medication and trying techniques that should help, e.g. keeping on going to work, socialising, doing everything required of me routinely, it seemed to have little effect in stopping these downward spirals.

However, for autistic burnout, one of the primary ways to recover is to rest and to stop doing things, to make environmental adjustments so you can recover. Looking back, I realised that when I started to feel low in energy and like everything was overwhelming and too much, I never rested. I kept pushing on, trying to stop the depression biting. Yet, I was not giving my mind and body the needed rest and recovery time. After a few weeks of trying to push through, I would then become clinically depressed.

Being severely depressed was the only time I allowed myself to stop. Those were the times when others around me would step in and offer to help more because I would reach a point where I couldn’t physically or mentally keep pushing through. My mind and body slowed to survival mode.

Now that I am more aware of the dangers of autistic burnout, I am actively trying to rest more regularly, and even more so when I start to feel that exhaustion creeping back in. I do believe this has helped keep me from getting depressed. I am coming up to around 10 months now since my last depressed spell. The longest I have gone without being depressed, for around 8 years. It is unlikely to work forever, but it has helped in my mind to distinguish between autistic burnout and depression.

How difficult is it to access appropriate mental health support?

For me, the biggest problems with accessing mental health support have been:

1. The difficulty of accessing timely support in the moment of mental health crisis. My crisis points have not been characterised by harmful or extreme behaviour; they may not even be considered a crisis by services.
2. Getting the correct type of support in place for a prolonged period. I now have a psychiatrist and therapist as part of my mental health support team on a long-term basis; this has, over time, led to a more stable period in my mental health, greatly assisted by the knowledge that I am autistic and bipolar.
3. There is a lack of early identification of autism and understanding that this could underly some difficulties, which in turn can create mental health problems.
4. Mental health support is not being appropriately differentiated for the autistic experience.

When I was first presenting to my GP with mental health concerns, I was referred to a Primary Care Mental Health team, and I saw someone for talking therapy/assessment with appointments held in GP surgeries. As soon as I appeared ‘better’, I was discharged from the service, but I could re-refer myself back in and saw the same person on and off over a couple of years, last seeing them in early 2011. I also did the group CBT course during that time, which was run by the person I was seeing.

My experience since then of trying to access mental health support via the NHS has been much less satisfactory. When I next presented to my GP with a return of anxiety and depression in 2017, I was at the mercy of the IAPT (Improving Access to Psychological Therapies) service. As I was experiencing suicidal thoughts at the time, I did get spoken to over the phone within a couple of weeks, but I then had to wait a few months before I was offered counselling. I had six counselling sessions at that time. Still, the worst of the depression and anxiety had already passed by the time I saw the counsellor. So, whilst it was beneficial to have someone independent to talk things through with, I didn’t feel I benefitted as much as had I been able to have counselling whilst during the crisis I had been in.

A few months after being discharged, I started to re-experience symptoms again. I referred myself back to IAPT. This time, it took around 3 months to receive a response, and because I had relatively recently accessed 1-1 counselling, there were limited options for what was on offer. Nothing was accessible due to my caring commitments for my children.

I sought out and was fortunate to be able to afford private counselling. I saw that counsellor for over a year with different frequencies of sessions. It was helpful initially, just having that space to talk, because talking openly about my feelings I find very difficult to do outside of therapy. Still, once my mental health dipped again, I didn’t feel adequately supported or that they had any idea why my symptoms kept reoccurring or what I could do to help myself. I took away a negative view of talking therapy in general and thought it just didn’t work for me. Whilst it helped in the short term, it didn’t do anything to address the recurrence of the symptoms that seemed to be getting ever more frequent.

Throughout this time, I was on anti-depressants under the care and monitoring of the GPs. The dosage was tweaked, but there was little clear advice on the medication or the benefits of trying a different type of anti-depressant.

By late 2021, I was experiencing another severe episode of depression and anxiety – the cycle of ups and downs seemed relentless. I was rarely stable mentally or for any prolonged period. I was eventually persuaded of the benefits of getting a mental health assessment by a psychiatrist – this was only available privately. I saw them in February 2022 for an evaluation, and medication was changed, which seemed to have a positive impact.

Previous negative experiences with counselling made me reluctant to try talking therapy again; it took until January 2023 for me to be persuaded otherwise. I knew by this point that attempting to rely on NHS services, which would be time-limited, would be ineffective. I was, and remain, in the privileged position whereby I can afford to have weekly private therapy.

When finding my therapist this time, I was much more discerning and knew what had been helpful and ineffective in the past. In January 2023, I was seriously considering whether I could be autistic too, so that formed part of my search. I needed someone happy to explore that with me as well as my presenting mental health needs. Rather than just contacting one therapist and going with them, I spoke to 3 initially before deciding which person to go with. That therapeutic relationship has proved to be more effective, and I have found the benefit over time of having someone who understands my circumstances and how I process different experiences.

Conclusion

Being late discovered as autistic and bipolar at age 43 presented me with many issues to think through, especially after experiencing many years of mental health problems. In terms of being autistic, that’s four decades worth of not understanding why I always felt different, why the world didn’t always make sense. Also, why I have struggled to find what I crave – a sense that I belong, that I am understood, that I am valued just for me – without being able to get that consistently, and not understanding why, no doubt contributed significantly to my mental health problems.?

It has been encouraging to see in recent weeks and months a growing awareness in the mental health world that autistic experiences need to be taken into consideration when treating mental health. Hopefully, this will eventually mean that:

1. There will be effective early screening for autism. Those presenting with mental health issues may discover why they experience the world differently and how they can adapt and request accommodations so they can thrive rather than struggle mentally.
2. Earlier identification will allow more effective treatment options to be considered if a mental health condition is diagnosed.
3. There will be better neuro-difference affirming mental health support. Misdiagnosis won’t be so prevalent, and autistic individuals won’t be denied mental health support just because they are autistic.

About the author

I am Joanne (Jo) Feaster, a late-identified autistic and bipolar woman. I started self-identifying as autistic in May 2023 and was diagnosed with bipolar type 2 in July 2023. I am married and live in Leeds with my husband John and my two exceptional children, both of whom were diagnosed in late 2023 and early 2024 as autistic and ADHD.

I write to aid my mental health and to share my lived experiences as an autistic and bipolar woman and parent carer of my neurodivergent children. I subscribe to the social model of disability and the neurodiversity paradigm. I see our strengths, positive qualities, and spiky profiles just as much as I recognise the barriers we face from society.